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  1. califsand
    07-19-2008 09:59 AM - permalink
    califsand
    Hi Jane,

    Believe it or not but you're the first person that has reminded me of how life WILL change! At least the first one who has said it in a way that my brain could wrap around AND that I could respect. I cannot listen to family about this topic because of their lack of involvement with the day to day care of my father... they simply do NOT know what I go through and don't make the effort to find out so their advice is not welcome and they usually don't bother to try.

    I'm on the brink of doing great things with my life and yes, I feel an impatience to move forward. The things I want to do will make a difference to others, especially to young children, and I think that the need to actually help someone is what is driving me, and driving me crazy as well! :)

    The helplessness I feel in the face of ALS is a motivating force. I am the kind of person that sees a solution to every problem but my father suffering from ALS holds NO solutions, only reaction. I have chosen to react by being totally available to him and it has cost me but I knew it would. I knowingly sacrificed my job, my relationship with my husband (it wasn't very good to begin with) and have put off dreams and goals, so that I could be there for my Dad. The rewards is no regret in relation to him as well as irreplaceable memories. I would not have changed the way that I chose to handle his illness even though I have moments of sadness at the place I am in right now in my life. Yes, I feel imprisoned but I do know it will not last forever and when I think about the prison he is in I feel guilty for these thoughts and feelings. However, I know it's human and normal. I think what makes me stand out is that I can admit it and I am learning to talk about it.

    It is not easy to admit these things, especially for someone like me who likes to stay behind the scenes and go by as unnoticed as possible but I recognize that for me to survive this experience with a healthy mind, I need to talk about it with people who understand. Doing that will not only make me feel better but I think it can help others that feel similar ways but are afraid to talk about it. I know that my venting puts words to what some others are feeling but are afraid to express lest they be judged as selfish people.

    Again, thank you for taking the time to talk to me. I needed it more than you know!

    Take care,

    Sandy
  2. fiddleplayer51
    07-19-2008 12:01 AM - permalink
    fiddleplayer51
    califsand,
    Thank you for writing me. Your frustration is so real to me. I recently answered your most recent post which alludes to a time in my young life when I felt alot of frustration because of wanting to really begin living.
    I really sympathize, but being as old as I am, I have the perspective one gains from living through many twists and turns and difficult, frustrating times, and I have experienced time and again that things have a way of working out. It's not easy to live the type of frustration you're currently living, but life is not static, and I truly believe you will soon take off and fly.
    Happy Birthday and best wishes to you. I really appreciate your message.
    Take care. I wish you strength, courage, and endurance during this time.
    Jane

About Me

  • About califsand
    What's your relationship with ALS/MND?
    My Dad has ALS and it has upended my life
    If diagnosed, when was the diagnosis?
    01/2004
    City
    sant barbara
    State or Province
    ca
    Country
    US
    Biography
    I'm a single mom of a 19 year old, the middle child but oldest daughter so I take care of everyone
    Occupation
    Insurance Agent by day, writer/editor by night and weekend. Someday I will be a full-time writer!
    Interests
    I love to read! Favorites are Stephen King, Dickens and William Wordsworth. Writing is my passion...

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  • Last Activity: 02-28-2009 09:25 PM
  • Join Date: 09-21-2007

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